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Lower-income and minority heart transplant recipients may have a poorer long-term outlook than white or more-affluent patients, a new study suggests.

In a study of 520 adults and children who received heart transplants at one of four Boston centers between 1996 and 2005, researchers found that those from the most disadvantaged neighborhoods were more likely to die or need a new transplant over the next five years.

The researchers gauged the patients’ socioeconomic status by looking at their neighborhoods’ typical income and education levels, home values and occupations.

They found that of the one-quarter of patients from the most disadvantaged neighborhoods, 35 percent died or received a new heart over five years. That figure was 25 percent among the rest of the study group.

When the researchers examined risk factors for transplant failure, socioeconomics and race and ethnicity were each linked to patients’ outcomes.

Minority heart recipients — most of whom were black or Hispanic — were 70 percent more likely than whites to die or need another new heart during the study period. Patients from the lowest socioeconomic group had a 50 percent higher risk than the rest of the study patients.

The findings, published in the American Journal of Cardiology, suggest that factors like income and race influence heart transplant success. But they do not explain why, according to the researchers, led by Dr. Tajinder P. Singh of Children’s Hospital Boston.

All of the patients had insurance, Singh told Reuters Health in an email, and the type of insurance — private or public — was not related to their long-term prognosis.

“Because it does not appear to be an access issue,” he said, “and there is no difference in outcomes based on type of insurance, some unmeasured factors related to socioeconomic position are affecting the outcomes.”

Those factors, Singh speculated, might include patients’ knowledge of their medical condition, including knowing when to seek help from their doctors.

Minority patients and those from disadvantaged neighborhoods generally had more episodes of organ rejection - in which the immune system launches a response against the donor heart. Those higher rates, the researchers say, may help explain the higher long-term risks of death and repeat transplants.

Although all donor-heart recipients go on immune-suppressing drugs to prevent rejection, many patients still develop signs of rejection at some point and may need changes in their medication. So it is important that patients be aware of the potential signs and symptoms of rejection — including shortness of breath, fatigue and weight gain from fluid retention.

Singh said the current findings help raise awareness that racial and income gaps in heart transplant success exist. The next step, he said, is to weed out the reasons so that they can be addressed.

SOURCE: American Journal of Cardiology.

Many black patients may not receive the same quality of stroke care in hospitals as white and Hispanic patients do, the results of a U.S. study suggest.

In the study, the researchers analyzed data from 1,181 hospitals participating in the American Heart Association/Americans Stroke Association’s Get With The Guidelines-Stroke quality improvement program between 2003 and 2008.

The study focused on 397,257 patients, average age 71, with ischemic stroke, which is the most common type of stroke and is caused by decreased blood flow to the brain. The study findings were published online March 22 in the journal Circulation.

Hispanic and white patients received similar levels of care, the study authors found, but black patients were less likely to receive most of the seven quality measures that are considered “evidence-based” stroke care.

The findings showed that black stroke patients were:
16 percent less likely than whites to receive the clot-busting drug known as tPA and to receive anticoagulants for atrial fibrillation.
12 percent less likely than whites to get preventive treatment for deep vein thrombosis and to be given anti-clotting medications at discharge.
3 percent less likely than whites to receive early anti-clotting medications, and 9 percent less likely to receive cholesterol-lowering therapy.
15 percent less likely than whites to receive smoking cessation counseling.
10 percent less likely than whites to receive “defect-free care,” which is defined as the proportion of patients who were given all eligible interventions.

“An interesting finding is that, despite being less likely to receive the interventions, black patients were less likely to die in the hospital than whites or Hispanics,” study lead author Dr. Lee H. Schwamm, director of the TeleStroke and Acute Stroke Services at Massachusetts General Hospital in Boston, said in a news release from the American Heart Association. “We suspect that’s because black patients are more likely to have stroke at younger ages and present with less severe strokes than the other groups.”

Schwamm said researchers need to “identify the causes of these differences in care among ethnic groups so we can develop strategies to eliminate that small but persistent disparity.”

SOURCE: American Heart Association.

People diagnosed with cancer have a difficult and scary battle ahead of them, but there’s comfort to be found in the multitude of patient groups, medical associations, research facilities and hospitals dedicated to improving treatment of their disease.

But what if a person suffers from thalassemia, a blood disease that affects hemoglobin? Or cystic fibrosis, a disease that causes mucus to clog the lungs and pancreas? Or jumping Frenchmen of Maine, a disorder that causes an extreme startle reaction to unexpected noises or sights?

These conditions all fall into the category of “orphan diseases” — conditions so rare that they attract little attention and few research dollars. People who have an orphan disease often find themselves misunderstood and misdiagnosed, and with no immediate support available to them.

“We get phone calls from literally desperate people,” said Stefanie Putkowski, a registered nurse and clinical information specialist for the National Organization for Rare Disorders, a nonprofit group dedicated to orphan diseases. “I don’t know if they are hopeless. They are desperate. They can feel very isolated.”

The U.S. Food and Drug Administration categorizes a medical condition as a rare disease if it affects fewer than 200,000 Americans at any given time. There currently are more than 6,000 known rare diseases that affect more than 25 million Americans.

“That’s almost one in 10 Americans,” said Mary Dunkle, vice president of communications for the rare disorders group. “Even though the diseases are rare, when you put them all together, a lot of people are affected.”

People affected by a rare disease all have remarkable tales, their own personal odyssey through a health-care system that cannot figure out what’s wrong with them, Dunkle and Putkowski said.

Putkowski related a conversation she had with a young mother who had spent six years trying to figure out why she was suffering repeated incidents in which she could not catch her breath.

Doctors puzzled over it for years. They prescribed steroids and inhalers, but her symptoms only worsened. Some doctors threw up their hands, said it was all in her head and urged her to see a psychiatrist.

The young woman finally went to one of the nation’s top pulmonary hospitals. After spending 12 days there, doctors figured out that she had Churg-Strauss syndrome, a very severe disease that causes inflammation of the blood vessels. The disease often tricks doctors because it presents as a lung disease when really it’s a vascular condition.

“She was told in another six months she would not have been treatable,” Putkowski said. “She ended up getting a real, true diagnosis. But, by that time, she had lost her job and was living in public housing on public assistance.”

Getting a solid diagnosis is just step one of the ordeal faced by a person with an orphan disease. Because the diseases are so rare, they lack the support groups and national organizations that have formed around more common illnesses. The young woman had called the National Organization for Rare Disorders because she wanted to find out if there were any support groups or treatment grants for Churg-Strauss syndrome, Putkowski said.

Orphan diseases also don’t attract as many research dollars because, by comparison, few people are affected by the diseases. For pharmaceutical companies, there’s less chance for a good return on their investment.

“Very little money goes into these orphan diseases because there’s very little money to be made in the end,” said Pat Girondi, founder of the Orphans Dream Foundation. “The patient base is too low.”

Girondi, a Chicago businessman, founded his nonprofit group to help support research into orphan diseases. His son, Rocco, was diagnosed in 1992 with thalassemia at age 2. Girondi said he spent years taking his son around the world — California, Canada, Italy — looking for treatments for the disease.

Rocco, who is now 19, survives by receiving blood transfusions about twice a month, and his father’s group is funding cutting-edge research into treating thalassemia with stem cells.

His is not an isolated case. Other families of people ill with an orphan disease have also sponsored research into the affliction that’s harming their loved one.

“What we have found … is that one of the main ways these rare disorders get research funding is through the patients themselves,” Putkowski said. “Either the patient or the patient’s family will mobilize themselves. For example, they’ll put donation cans out in local gas stations. We’ve had the most remarkable stories of people who have started just like that and have come a long way in raising research funds.”

Girondi’s foundation and Putkowski’s group both help people find support for their disease and try to direct research funding toward developing treatments and cures for orphan diseases.

Though research into orphan diseases might seem specialized, it holds the potential for paying big dividends toward medical science as a whole. Doctors looking into rare disorders might learn things that would apply to a broader range of people.

Dunkle gave the example of a research team now studying a very rare bone disease. “The more they learn about that disease, it will teach them more about things as simple as fixing a broken arm because they are researching how bone grows,” she said.

SOURCES: Stefanie Putkowski, R.N., clinical information specialist, National Organization for Rare Disorders, Danbury, Conn.; Mary Dunkle, vice president, communications, National Organization for Rare Disorders, Danbury, Conn.; Pat Girondi, founder, Orphans Dream Foundation, Chicago; U.S. Food and Drug Administration, Bethesda, Md.

In a study of Japanese schoolchildren, vitamin D supplements taken during the winter and early spring helped prevent seasonal flu and asthma attacks.

The idea for the study, study chief Dr. Mitsuyoshi Urashima, told Reuters Health, came from an earlier study looking at whether vitamin D could help prevent the bone-thinning disease osteoporosis. The researchers in that study noticed that people taking vitamin D were three times less likely to report cold and flu symptoms.

This led Urashima, of Jikei University School of Medicine, Tokyo, and colleagues to randomly assign a group of 6- to 15-year-old children to take vitamin D3 supplements (1,200 international units daily) or inactive placebo during a cold and flu season.

Vitamin D3, or cholecalciferol, is more readily absorbed by the body and more potent than vitamin D2, or ergocalciferol, the form often found in multivitamins.

During the study, conducted between December 2008 and March 2009, 31 of 167 children taking placebo caught influenza A, the most common form of the virus, compared with only 18 of 167 taking vitamin D.

The vitamin D group was 58 percent less likely to catch influenza A, the researchers report in the American Journal of Clinical Nutrition.

Vitamin D also appeared to suppress asthma attacks in children with a history of asthma. Two children taking vitamin D had asthma attacks during the study, compared to 12 children taking placebo. Urashima admitted to being a bit surprised by this finding and hopes to confirm it in a randomized trial targeting children with asthma.

Dr. Adit Ginde, of University of Colorado Denver School of Medicine, who was not involved in the study, told Reuters Health: “This is the first time a study has been done that rigorously shows that vitamin D supplementation can reduce a type of influenza in a dedicated clinical trial.” Ginde and colleagues published a study a year ago showing that asthmatics with lower vitamin D levels were at five times the risk for colds and flu.

In the Japanese study, vitamin D supplementation did not prevent influenza type B, which tends to appear later in the flu season than the “A” flu variety.

Ginde said there is no solid explanation for why vitamin D prevented influenza A and not influenza B. “The immune system fights different viruses in different ways. This finding needs to be explored in more detail,” Ginde said.

Based on the current study, giving kids vitamin D supplements during the winter may help reduce cases of influenza A, the researchers conclude. Urashima suggests that children could take 1,200 IU per day starting in September to prevent flu and asthma attacks during the flu season, but best for parents to check with their pediatrician first.

SOURCE: American Journal of Clinical Nutrition.